Magical mystery of the Shriners

After Sue Cooke learned her granddaughter had a rare form of hereditary rickets, she says she approached several local doctors.

Some told her they couldn't treat Trinity, Cooke says. Others told her they didn't know how.

"It's such an antique disease," says Cooke, of Bartonville.

Pam Adams

After Sue Cooke learned her granddaughter had a rare form of hereditary rickets, she says she approached several local doctors.

Some told her they couldn't treat Trinity, Cooke says. Others told her they didn't know how.

"It's such an antique disease," says Cooke, of Bartonville.

Frustrated, she called Shriners Hospitals for Children. She remembered the network of Shriners Hospitals because her 62-year-old sister had been treated there for polio-related problems as a child.

"All the magic they do, all the variety of problems they treat, I don't think anybody remembers them anymore," Cooke says.

Mohammed Shriners of Peoria also worry they've been forgotten. That's why they're conducting a free screening and evaluation clinic Nov. 12 at Proctor Hospital. Children up to age 18 whose conditions are eligible could receive free treatment and free transportation to Shriners Hospitals for Children in Chicago, St. Louis or Cincinnati.

Henry Lawrence, a Peoria Shriner, equates Shriners Hospitals for Children to St. Jude's Children's Hospital.

"We're probably not getting as many patients out of the Peoria area as we could be," Lawrence says. "Peoria has great medical care, but Shriners is free."

Easter Seals, for instance, provides or has access to so many different services that they rarely refer children to Shriners Hospital unless there are financial difficulties involved, according to Dr. Andy Morgan.

Still, local Shriners believe some children may fall through the cracks.

"Surprisingly, there are children, 4, 5, even 6 years old, with disabilities whose families don't think there's any way of getting help," Lawrence says. "Frequently, a patient or child reviewed in our clinics has never seen a medical professional about how their issue can be corrected."

About 175 area children are patients at Shriners Hospitals. Local Shriners average four round trips a week in two vans, transporting children to appointments and check-ups at Shriners Hospitals in Chicago and St. Louis.

Cooke and her granddaughter, 7-year-old Trinity Cooke, took the Shriners' volunteer van to St. Louis on Sunday for Trinity's annual check-up.

Trinity, a talkative first-grader at Hollis Grade School in Mapleton, makes the weeklong stay sound like a cross between a vacation and a slumber party. To her, the St. Louis hospital is dozens of playrooms, pedal cars, toy cooking sets, real puppies for therapy, a "giant" art room with origami swans, and the place a friend taught how to swallow "magic" pills with water instead of mashed up in peanut butter.

"I tried to teach her for a year," Cooke says. "She gets there and learns in one day."

The pills are to alleviate the effects of rickets, a condition where a child's bones are soft and weak. It's often associated with bone pain and abnormalities such as extremely bowed legs, or as Trinity calls them, "bendy legs."

Nutritional rickets are caused by a serious vitamin D deficiency. Trinity's hereditary rickets have to do with her kidneys' inability to hold onto phosphates and calcium.

Shriners hospitals and research centers treat the largest number of hereditary rickets cases in the world, according to spokesperson Tammy Robbins.

But to Trinity, they're the place with the magic pills that made her bendy legs very straight.

- Why: To identify potential candidates, up to age 18, for free medical care at Shriners Hospitals in St. Louis or Chicago.

- BENEFITS: All care is free, regardless of a family's ability to pay, a benefit for families with no health insurance coverage, limited coverage or whose child requires highly specialized care. If accepted, transportation to Shriner's hospitals will be provided.

- For more information: Call 657-0583.

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